David Click's Blog, page 3

WAITING, PANCAKES, AND BACK IN THE DAY

Back in the day, a teenage boy waited on the corner of Cassingham and Elm. The sun had already slipped below the surrounding residential horizon, and the skies had already changed to shades of gray and some black. In the distance, stadium lights pushed skyward and reflected off low clouds hovering over the small community that had gathered for a Friday night high school football game. Pregame sounds from marching bands, announcers on loudspeakers, and enthusiastic cheerleaders filled the air and carried to the street corner where the boy patiently waited for a girl he had asked to the game.
 
What if she doesn’t show up? His mind raced with worry. What if I say all the wrong things? He practiced lines he had rehearsed in his head. He repeatedly scanned the sidewalks for the girl’s arrival. He took many deep breaths to calm himself. The wait was agonizing, yet hopeful.
 
Soon, the distant cheers grew louder and he realized the football game had started. Am I at the wrong corner? He wondered. Did she have a change of plans, or a change of heart? He paced about in small circles, nervously wiping his sweaty palms across his pants, while the streetlight above lazily changed from green to yellow to red, and then quietly back to green. Each minute felt like hours. Each light change reminded him of his solitude. Each distant cheer added to his isolation.
 
They weren’t a couple, by any means. Far from it. Although he had a crush on her since the Fourth grade, the game would be their first date. He wondered if he should hold her hand when they walked to the stadium. He fumbled through his pockets to make sure he had enough money to buy her a Coke at the game.
 
Before long, he heard the marching band begin its halftime performance, and the boy realized their meeting would probably not happen like he had hoped. It was getting late. He realized the girl, for whatever reason, would not be meeting him at the corner. Perhaps she thought we were to meet at the game, he thought. He sighed with resignation, and then made his way to the stadium alone, yet still hopeful.
 
The boy entered the loud stadium and walked towards a group of friends and other restless teenagers gathered along a low fence line surrounding the end zone. Where have you been? His friends shouted. The game is almost over, they laughed. Then, they pointed.
 
The boy followed their direction and saw the girl. She stood smiling and laughing, seemingly lost in conversation with another boy as if they were an established couple.
 
The boy’s heart broke.
 
I share this story with Alex, every now and then, to help him understand life's disappointments, especially when it comes to girls. I tell him it happens to everyone. I tell him you gotta roll with the punches and keep moving forward no matter how hard it can be. I tell him disappointment is not a reflection on him, it’s just the way things happen sometimes. I tell him that someday he’ll find the one. It just takes time. He’ll shrug and nod understanding. He’ll smile and try his best to move on. But, you feel his pain. You feel his loneliness. You also feel his frustrations of living with Duchenne.
 
I share this story because he had garnered the nerve one day to ask a girl to visit him at home and play some video games. She agreed, and they set a date a couple weeks in advance. As you can imagine, Alex counted the days to until her arrival. He planned out what video games they would play or movies they would possibly watch. He told me what shirt he wanted to wear.
 
The day of the meeting, he asked me to dress and groom him, and get him ready. He asked me to hoist him into his wheelchair hours earlier than needed just in case of her early arrival. He made his way downstairs and rolled around the house waiting for the visit to begin. He stared out the windows and, more than once, swore he saw her car driving up the street. After a while, weaves of wheelchair pacing had grooved into the carpets and the planned meeting time had long since passed. Still, he waited…hopeful.
 
A couple hours later, the young woman texted that she couldn’t make it, and apologized for not coming to see him. He had been all dressed up and ready to go. He debated if he should go back upstairs alone. Seeing his disappointment, I took him to the movies and then IHOP for some late-night pancakes.
 
There, Alex shared his heart. “I wonder if I’ll ever have a girlfriend. I mean…I can’t walk, YOU have to drive me everywhere, and YOU have to feed me every bite when I eat. I can’t do anything by myself! I can’t go anywhere by myself! If someone ever dates me, they date you, too!” He looked away, as if searching for something, anything to prove he was a teenager like anyone else.
 
He turned back to me and opened his mouth for another bite of pancakes. I wiped his lips.
 
As any parent, you give support as best you can. You tell him not to worry. You tell him it’s not just him. You tell him everyone goes through tough times and that many experience disappointment or heartbreak. But, as a Duchenne parent, these moments tear you apart. Sure, teen angst is common throughout anyone’s adolescence. Sure, we’ve all been there. But, with Duchenne, you hear him. You feel him. You know what he is thinking. He wants to be like everyone else, in a world where the odds of having Duchenne are roughly 1 in 3500. Despite your words of understanding and comfort, his frustrations of immobility and complete dependence for everything are real. You understand and let him know that you do.
 
And, it’s not just with girls. Feelings of social isolation happen with his guy friends, as well.
 
For example, Alex recently invited six young men to join him for a movie and a sleepover to celebrate his 19th birthday. He had hopes of laughter, pizza, hoots and hollers late into the night, if not morning. He imagined company and conversations with people other than Mom and Dad for a change. Nights with friends make him feel a part of it all. He joked that he hoped his friends wouldn’t cancel like the girl he had invited a couple of weeks before.
 
Then, unfortunately, they did. One by one.
 
Days leading up to the party, two friends canceled because of conflicting Spring vacation plans. The night before the party, another canceled because of work commitments. Then, while grooving his wheelchair in circles and waiting downstairs for the remaining guests to arrive, two more canceled for last-minute college or family obligations. The sixth, and last, invitee then texted that he couldn’t make it because he didn’t have a car and couldn’t get a ride.
 
Alex looked at me and simply shook his head. “I’m cursed,” he said.
 
Just like that…birthday plans with six friends…dashed and nearly destroyed. We had to do something. We called the sixth friend and told him we would pick him up so Alex would have at least one friend at the movies with him other than Dad. After the movie (Ready Player One), we picked up another friend after his work shift had ended. Determined to enjoy his party, Alex and his two friends stayed up most of the night celebrating another year.
 
Sigh. Crisis averted.
 
What many may not realize is the magnitude of visits to a kid with Duchenne. Any visit, anytime, anywhere, is treasured. Any visit, anytime, anywhere, is revered. If a visit is possible, our family makes time for it to happen. We do because, with Duchenne, as your son’s world shrinks, his friends’ lives grow exponentially. As he becomes increasingly dependent for everything, his friends become increasingly independent and launch into active lives. You can’t blame them. In fact, you cheer for them, because they have become like family over the years and their success is encouraged! Still, for the kid with Duchenne, the separation in young adulthoods becomes too swift. It happens too fast. The gap, sadly, grows wider…and expands every day.
 
Family can fill the gap, and kind neighbors as well, but it’s just not the same as friends. We wish we could do more.
 
So, as you can tell, we are entering a transitional period in Alex’s life. As he approaches high school graduation, many of his friends are moving on to their next adventure. Some are heading to college. Some are beginning new jobs. Either way, they are moving onward as well they should.
 
But, unfortunately for Alex, the friend-market is thinning and will undoubtedly become more so in the coming years. He may meet new friends when he is out and about, but that will become harder and harder as his Duchenne advances and he spends most of his time at home with Mom and Dad. He’ll also chuckle and shake his head as our aging heads inevitably tilt back asleep while watching a movie with him. When that happens, he sometimes calls friends and family in other states to stay connected at any hour of the night.
 
God love him.
 
It’s times like these that tap your heart and encourage you to continually tap his. Despite his restrictions with Duchenne, you encourage him that what matters most is his spirit for life and his belief in himself. You tell him that you love him and always will. You encourage that what matters is happiness and love for one another. You pump him with self-confidence to face the difficult days, because you know there will be many. You do everything you can to keep his chin up, despite his declining physical abilities. You laugh with him as you watch his favorite sit-com or YouTube video. You take him to a park or a bookstore or a Reds game and hope for a win. You do anything of the sort because you want to give him the best life he can have. You do because YOU see the gift he brings to the world, and you hope others see it as well.
 
You do because he needs the connection,
 
…and deserves as much.
 
Over the pancakes at IHOP, I shared my story again with him about the boy waiting at the corner. I told him that although the girl did not meet him at the corner, she is a good friend to this day. I reinforced that although friends may come and go, good friends will always be there for him in the years to come.
 
He smiles, shakes his head, and says…
 
”Thanks, Dad. But, do you realize how many times you've told me that story!” Update: The young woman who had to cancel her visit the day of the IHOP pancakes is upstairs at this very moment as I write…laughing with Alex and playing Madden 2018. They are good friends, and the laughter coming from his room couldn’t make me happier. You go, Alex!

THE KEY

For the past 17 years, I have held our son Alex’s hand every night as he falls asleep. It’s a special time between father and son as we lie on our backs and talk to the ceiling. We talk about life, girls, video games, and anything weighing heavy on his teenaged mind. I listen and offer guidance where I can as Alex opens his heart and bares his soul. Over the past several years, our most poignant discussions have centered on one question about life with Duchenne Muscular Dystrophy.

“Why?”

Some of you may have faced this question before. It’s not an easy one to answer.

For us, I’ve tried to capture our talks and feelings in a novel titled The Key.

I hope you enjoy it!

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THE KEY

​“Thrilling!” “Action-Packed!” “Thought-Provoking!”
“A Remarkable Story!”

From Jerusalem to Milan, the foothills of the Italian Alps to Lake Como and Bellagio, The Key propels readers on a desperate search for truth about Jerusalem’s destruction and the problem of human suffering. A sequel to The Cave, David Click’s debut novel, The Key challenges readers to contemplate God’s Plan, our responsibilities to one another, and the future of humanity through the eyes of a man seeking revenge and another living with Duchenne Muscular Dystrophy.

“Perhaps the reason for suffering is much deeper than faith and a plan. Perhaps suffering is more than lightness and darkness, or blessing and sacrifice. Perhaps the reason for suffering can be found inward instead of outward.” - Excerpt from The Key

Anticipated release: February 2018 (Adger Publishing, LLC)

NEXT THURSDAY CAN WAIT

Duchenne Muscular Dystrophy is a most unwelcome beast. Without invitation, it steals your son one muscle fiber at a time, laying claim to his legs, arms, and torso for starters, then moving on to his lungs and heart without care. It attacks his ability to simply breathe, eat, or control his body in manners most of us take for granted. It holds complete and total disregard for his hopes, dreams, or fears, as well as your own. It relentlessly claims new territory as it camps, spreads, and seeps into every aspect of your life, every day and every night.

Most unwelcome indeed.
 
As it will be next Thursday, one week after Thanksgiving, when we visit Cincinnati Children’s Hospital to discuss Alex’s latest round of testing and evaluations performed last week. Next Thursday will be a long day of waiting and listening in a windowless clinic room where limits of patience, hunger, and emotions are tested. It will be a day filled with administrators, technicians, nurses, and doctors specializing in pulmonology, cardiology, neurology, and endocrinology. Throw in dietitians, physical therapists, social workers, and palliative care specialists, and the day will be like a large family gathering of revolving doors, serious talks, and some tears. We’ll sit and take it while doctors share Alex’s steady decline in nearly every measurable category related to this incurable disease. We’ll sigh deeply, hold hands, and wish it was all a dream.
 
But, it’s not.
 
It’s life with Duchenne.
 
Next Thursday, we’ll see old friends we have known for years like Kenny-Benny in cardiology check-in who always shares smiles and laughter with Alex. We’ll see Dr. Wong in neurology, as well as her assistant Andrea, who have been with Alex since he was 3 years old. We’ll see Drs. Rutter, McCormick, and Garbani, and many others at our home-away-from-home located at 3333 Burnet Avenue.
 
We'll hear reminders of Duchenne’s unstoppable progression. We’ll listen to Dr. Sawnani, Alex’s pulmonologist and all-time favorite doctor, describe Alex’s declining lung function with heartfelt (though sometimes difficult) honesty. We’ll listen to Dr. Ryan, the cardiologist who works to protect Alex’s strongest muscle of all. We’ll listen as Alex shares his hopes and dreams with Dr. Widener, his palliative care doctor who is tasked to help Alex live as comfortably as possible as life gets tough. All said and done, it’s a long and exhausting day, one that usually leaves our heads full and our hearts heavy.
 
But, next Thursday is just that. It’s NOT today! It’s not turkey, mashed potatoes, and green beans. It’s not Italian wedding soup, sweet potatoes, and stuffing. It’s not creamed corn casserole, tossed salad, and homemade bread! It’s not full bellies, dishes, and football! It's not, because today is OUR day! Next Thursday can wait!
 
I say this because today we focus on the good in life with Duchenne. Although next Thursday looms heavy, we have today. It’s precious. It’s now. And, it’s ours to enjoy and indulge. Let the feasting begin!
 
And today, this Thanksgiving, I am thankful for many things currently in our life with Duchenne.
 
Things like…
 
…seeing life from an incredible perspective I never would have dreamed
…witnessing Alex’s genuine love for everyone…seriously, everyone!
…watching him approach anyone with confidence and a smile
…seeing the hope in his eyes as his hand loosely curls for a fist-bump
…seeing his genuine joy for attending school and being with friends, teachers, assistant principals, security guards, and custodians
…listening to his hopes and dreams about life, girls, and everything teen-aged in between
…watching him work the phones in search of a friend to sleep over
…going to his school to help him use the restroom or sit him back in his wheelchair
…helping him with the simplest of tasks we often take for granted
…calming his hopes, worries, and fears
…helping him to understand life and death
…wiping his tears
…encouraging his dreams
…sharing his joys
…sharing his love
…hearing his laughter
…experiencing his smile
…holding his hand while we sleep, and
…hearing him say I love you every night.
 
On a personal front, I am also thankful for…
 
…Friday Night Pizza and Beer when Kristy and I carve out time to talk about life, Duchenne, our hopes, and our dreams (as well as listen to classic rock and enjoy a cold one or three)
…writing, fantasy sports, Sudoku, and hummus - my escapes from the daily grind
…friends who take the time to ask about Alex
…my coaches who encouraged me to do my best and never give up
…my parents who demonstrated commitment and love
…our daughter who fills us with pride and joy
…my wife who loves and completes me (and tolerates my quirks)
…our little family who travels this challenging road together.
 
For Alex, I am thankful for…
 
…Star Wars, need I say more?
…superheroes, who give him hope in the fight of good vs. evil
…video games that allow him to escape and conquer
…movies that entertain and expand his imagination
…his friends Zach, Brendan, Adam, Liam, and Ben, to name a few
…his secret crushes who shall remain nameless
…neighbors with driveways who take the time to talk and laugh with Alex
…anyone who allows Alex to pet their dog
…waiters and waitresses that share in Alex’s smile and laughter
…zoos, malls, parks, museums, and theaters or any open space for wheelchairs
…concrete, asphalt, or any other smooth surface to roll unobstructed
…storefronts without a step
…cell phones so Alex can call us whenever he needs
…Alexa for voice-activated calls (as his arms become too weak to hold a phone)
…a power wheelchair so he can get out and about
…a handicapped accessible van
…a Hoyer lift to transfer Alex from his bed to his wheelchair, and back again
…Bi-PAPs, sip vents, and cough assists
…technologies and treatments that give us another day
…caring and compassionate doctors, nurses, administrators, and technicians
…our little family
…Our son who shows us how to live!
 

So, there you have it. A brief and brighter side of living with Duchenne, as I see it. Although next Thursday will undoubtedly remind us of the monster’s sadistic and progressive march, Alex helps us to realize we have today and we have each other! And, nothing is more beautiful when you really think about it! For THAT perspective, we give thanks!
 
Life sometimes isn’t always what you expect. It isn’t always what you dreamed, hoped, or planned. But, it’s life! It’s your life! So, find the good, be thankful, and live with love!
 
We see no other way.
 
HAPPY THANKSGIVING EVERYONE!

Please pass the gravy!

A TIMELY TEXT

We have attended several West Clermont High School sporting events this fall, including five boys soccer matches, two football games, and one girls soccer match to be exact. We do so because Alex is a social kid who yearns to stay connected with others despite his limitations living with Duchenne Muscular Dystrophy. We do so because he enjoys meeting and interacting with people from all walks of life. We do so because he enjoys watching sports, not necessarily for the competition, but for the whirlwind of activity that surrounds it.
 
Hey! There’s my friend from my Science Fiction class!
Mom, the Wolf mascot waved to me!
Hey, look at that! My old science teacher is a football coach!
Dad! I’d like a hot dog…with mustard and ketchup please!
 
We have prime viewing at these events, too! Each game, we sit in the designated handicapped accessible seating area located in front of the stadium. Although the stadium is state-of-the-art, you can tell someone designed the accessible seating with the grandparents in mind as the seating is separated from the wildness of students coming and going throughout the game. The accessible seating area includes a long gradual ramp, space for wheelchairs, and companion seating. All must-haves, if you ask me! Yet, for the student…the handicapped student (and parents) sitting apart from his peers and friends, such seating can be isolating. That’s when the unexpected, kind words of another can make all the difference.
 
As if living with Duchenne is not challenging enough, accessible seating often adds salt to the open wound of life with disability. From where we sit, Alex sees his friends at the far end of the stadium, in the student section. He sees them jumping, cheering, and throwing powder in celebration of every score. He sees them standing and having the apparent time of their lives and plotting where to go after the game, while he sits with Mom and Dad…and someone else’s grandparents. He sees cheerleaders throw small plastic footballs over his head and high into the stands, oblivious to the open hands resting on his knees. He sees his friends and peers uniformed and competing on the field below as they enter the prime years of their lives. He sees vitality everywhere.
 
We sure do.
 
While I try to distract myself with the action on the field, coaching strategies on the sidelines, or a player’s technique, Alex swivels his head for connection beyond just Mom and Dad. Throughout the game, he scans the crowd of thousands for friends, parents, or teachers he hasn’t seen in a while. During halftime, he hopes to catch their eye as they walk by lost in conversation towards the concession stand. After the game, he sees players bro-hugging, cheerleaders being hoisted on shoulders, bandies dancing and trumpeting impromptu rhythms, and proud parents congratulating their exhausted sons or daughters, as the community gathers to cheer and sing the school alma mater and fight song.
 
The atmosphere at West Clermont is alive! It’s electric! It’s nostalgic.
 
It can also make you feel the weight of Duchenne as you notice life beyond your son’s reach. It’s tough. You think about your lost dreams. You think about the life you thought you’d lead. You think about many things unrelated to the game, as you lift him back and reposition him in his wheelchair while the crowd roars for a touchdown.
 
Nonetheless, we’ve lived with this monster long enough to know how to deal with it. We know what to say and how to support Alex’s tough questions about Duchenne. We’ve had difficult conversations about life and death, enough to know they’ve only just begun. We understand the heartbreak of teenaged years. We understand the reality of Duchenne. We live with it every day.
 
But, we still feel it. We see it. We hear it. It’s everywhere.
 
Life.
 
Perhaps it’s sports in general. Perhaps it’s the strength and speed of athletes. Perhaps it’s the youthful energy we dreamed Alex would experience. Perhaps it’s a reminder of the life with Duchenne. Perhaps it’s a reminder of life without it. Perhaps it’s just us. Perhaps it’s just me. Regardless, Alex seems not to let it bother him. We should take note. He has much to share.
 
I say this because as his caregiver, sometimes I am blind to the lesson though he lays smack before me waiting to be turned or fed or comforted. Sometimes I don’t realize the gift Alex brings as I dress, hoist, and position him every day and night. Sometimes I don’t see the beauty of brushing his teeth, combing his hair, or helping him use the restroom at any and all hours. Sometimes the daily grind of Duchenne overshadows the daily message it delivers. Sometimes, I cannot see the forest for the trees.
 
And, sometimes, all it takes is a simple text to remind me of the love this young man brings to the world. For that, I am forever thankful.
 
I say this because, late one night, after a tough West Clermont loss, a friend of Alex’s sent him a text message. It was unexpected, but so needed on many levels.
 
The message went like this…
(disregard the lack of punctuation…it’s a generational thing)
 
Alex: “Nice game tonight man (thumbs up emoji)”
 
Brendon: “Thanks for coming you’ve made my senior year amazing and I can’t wait to make even more memories and laughs with you bud you’re literally an inspiration to me with how positive and how happy you are every day and the positive outlook you have on life I strive to be as happy as you are every day Alex you’re an amazing kid and I’m so so so so happy that we met this year I hope that we can hang out every weekend and make awesome memories”
 
I'm glad others see it. I'm equally glad to be reminded of it. I am especially glad his peers see it.

Alex only met Brendon a couple months ago in school. The young man is incredibly fast and talented…and a team captain. His message is a reminder of the effects we have on one another, despite our limitations. It’s a reminder that life is not about the game, crowd, cheers, or score. It’s not about the past or the future…it’s about our support for one another right now. It’s about the smiles we share and the hope we give. It’s about living with love. It’s a reminder how we can all make a difference to one another.
 
Alex still beams with pride and joy when he shows me that text…as do Kristy and I.
 
A timely text indeed.
 
After the game, as the stadium empties, we always linger to watch the players, coaches, bandies, students, and parents gather on and then depart from the field below us. It’s a quiet moment for our little family as we avoid exiting crowds and parking lot congestion. As a consequence, we are generally alone in the accessible seating area and among the last to leave the stadium as they turn out the lights. While we wait, we’ll ask Alex if he wants to head down on the field, to be a part of the energy, to see the players and coaches…to be a part of the crowd.
 
He’ll consider it, look to us, and then open his hand to hold.
 
“No, thanks. I just want to stay here with you!”

THE LAST FIRST DAY

Well, tomorrow is the day. Where did the time go? Tomorrow signals an ending as much as it does a beginning. It brings sorrow as much as it does excitement. It’s the groaning of first-day pictures followed by the enthusiasm of renewed friendships. It’s the cold reality of learning amidst the thrill of seeing who sits around you. It's the return of routine, day after day after day. It’s noisy lunchrooms, crowded hallways, and slamming lockers. It’s marching bands, mascots, and Friday Night Lights. It's tradition. It's American. It’s back to school!
 
If it was only so simple.
 
You see, tomorrow also marks the start of our son’s final year of high school, and most likely his final year of public education. Alex will be a Senior this year, which is incredible to believe. It seems only yesterday we brought home a little boy from Romania, wide-eyed, apprehensive, yet smiling. It seems only yesterday we enrolled him in Clough Pike Elementary with simple worries of Will he make friends? Will he be a good student? Will he color within the lines? It seems only yesterday we sat down with his preschool teacher to share his challenges with the still immature beast known as Duchenne Muscular Dystrophy. It seems only yesterday we watched him waddle down the hallway, eager to catch up to his classmates, while we held our breath he wouldn't fall.
 
It seems only yesterday…
 
Like any student, Alex will awaken tomorrow with excitement, only he won’t jump out of bed or leap down the stairs. He won’t grab a bite to eat, sling a backpack over his shoulder, and dash outside to a friend’s waiting car. Instead, Alex will lie still in bed waiting for us to remove his BiPAP ventilation from his face. He will wait for us to help him use the restroom, select what to wear, and eat breakfast. He’ll endure turning, twisting, and lifting as we pull clothes onto his body, secure a sling beneath him, and then hoist and roll him across the room before lowering him into his power wheelchair. He will then be repositioned until his comfort is achieved. He will sit patiently while we brush his teeth, comb his hair, and position his slipper-covered feet on the foot tray. After smiling for traditional first-day pictures, Alex will roll into the minivan, wait while we buckle him up, and then urge me to get a move on it, because he’s got people to see!
 
As we pull into the school parking lot, his worries may surface a little for the challenges he’ll face. But, knowing Alex, he’ll push them aside in anticipation of finding students, teachers, administrators, or staff he hasn’t seen all summer. He’ll eagerly roll out of the van, endure yet another round of lifting, repositioning, and feet placement before I publicly embarrass him by using Dad-spit to wipe crusted jelly from the corner of his mouth. Then, before rolling away into the crowd of nearly 2,400 other students at the new West Clermont High School, he’ll turn to me and ask for a hug...and I will gladly oblige. He’ll nod he’s ready, but then ask if it's okay to call when he needs help.
 
You bet, Bud. Go get ‘em!
 
With some apprehension, Alex will pivot his power wheelchair and zoom away, hopeful to fit into the social scene just like anyone else. As he disappears into the crowd on his last first day, I’m not saying there will be a tear in my eye.
 
Sigh.
 
So goes the easy part of his school day.
 
I say this because the first of his calls for help typically comes within an hour or two of dropping him off. Alex will call for me to either lift him back in his wheelchair because he is uncomfortable (note: I would NEVER expect a teacher to risk personal injury lifting a 210-lb. young man), help him use the restroom (a bottle), or bring him home because of back discomfort (believe me, it’s real!). Any of these reasons is understandable considering his Duchenne, especially since Alex's last spinal x-rays showed compression fractures now in EVERY thoracic and lumbar vertebra, except L3. Add to the daily challenge his steadily declining lung function, and it’s no surprise the day wears on him. Yet, he is determined.
 
I can only imagine his discomfort while he sits for long periods of time in the same position, unable to adjust. I can only imagine him trying to grin and bear it so as not to disrupt his class or interrupt a teacher. I can only imagine Alex debating whether he should call me. I can only imagine his frustration when he decides to call, but then cannot bring his cell phone up to his ear. I can only hope someone helps.
 
His school challenges won’t end there.
 
Because of Duchenne, Alex must ask for support to…
 
…open closed doors
…exit class early (i.e., wheelchairs and hallway gridlock do not mix well)
…push buttons on the school elevator. (Note: his new high school has three floors, and his class schedule sends him from floors 1 to 2 to 3 to 2 to 1 to 2 to 1…every day. If you’re counting, that’s 14 separate pushes for someone who cannot reach the buttons and must seek help for every push).
 
In the classroom, he must ask for support to…
 
…access his backpack, which he carries on the back of his wheelchair (though this may be replaced by a portable ventilator this year)
…place a pencil in his hand
…take notes (his writing is very slow)
…open a textbook
…hold a textbook
…turn a page
…hold a page
…take tests
…take quizzes
…use a computer
…perform class projects
…get the teacher’s attention (i.e., Alex cannot raise his hand)
 
If he makes it to fifth bell (lunch), he must ask for support to…
 
…carry a lunch tray
…select and receive his food
…scan his student ID to pay the cashier
…EAT his lunch
…DRINK his water
…wipe his mouth
…brush crumbs off his shirt
…dispose of his lunch tray, and too often
…find someone to sit with him*
 
(*major kudos to his friend, Liam, who has helped Alex in the lunchroom in years past. Hoping their lunch schedules align again this year!)
 
Not surprisingly, after about one to two months of these daily challenges and Alex’s overall physical fatigue, the school day becomes too much for him to handle. That is when he typically transitions to Home Instruction, a program where a district teacher comes to our home a few days each week for one-on-one instruction with Alex.
 
In Home Instruction, Alex stays current and connected with his school. His class typically begins after the regular school day and lasts for a couple hours while he lays in bed. His teacher helps him to read books, discuss academic concepts, and take tests including rounds of state-mandated testing and even the ACT, all required for graduation. Home Instruction will then likely continue through the winter months due to cold temperatures and his fatigue, and then slide through spring towards graduation. The arrangement is not ideal for a social kid like Alex, but it works and has served him well for the last six years.
 
As tomorrow brings a new day, a new school, and a final lap in Alex’s public education, our wish for him is simple….keep smiling. While he lives with an unforgiving monster that steals a little of him every day, we are in awe of his approach to life. It’s beautiful. It’s remarkable. It’s Alex. His school year will be challenging, but we couldn’t be prouder of the young man he has become.
 
So, what’s his next step?  The one after high school graduation?
 
Simply put…who knows?
 
With Duchenne, you focus on the present and let the future sort itself out as you go. You do what feels best for your son and consistent with what he wants out of life. You do anything to keep the smile on his face and the joy in his heart. We realize many young men with Duchenne further their education into college and beyond. Many others continue into successful careers. Some marry and live effectively on their own. Some get jobs. Some are vocal advocates. Some stay at home. It’s a wide range of possibilities. For Alex, we take it one day at a time, if not one moment at a time. Simply said, we will cross that bridge when we get there and when he’s ready.
 
Tomorrow, as I watch him roll into school on his last first day, I’ll now admit a tear will fall.
 
It will because this young man is happy...
 
...which is our ONLY goal for his education.
​
​Go Wolves!

FIFTEEN YEARS IN

Fifteen years in since we answered the call. Fifteen years in since we picked up the phone to hear a Cincinnati Children’s Hospital neurologist change our lives. We barely knew her at the time, though she already knew our future better than us. She knew our hopes, dreams, and lives would never be the same. She knew the progression. She knew the heartbreak. She knew the pain. We just listened….in utter disbelief.
 
“Your son has Duchenne Muscular Dystrophy.”
 
Silence.
 
Every Duchenne parent remembers the call. Ask them about it, sometimes, and I guarantee you will witness a snort of incredulity followed by a shaking head, a deep breath, and faraway eyes. The call changes everything. It is stunning. It is unbelievable. It leaves you speechless, numb, and confused. It prompts denial. It suspends time.
 
Excuse me? Duchenne what? There must be some mistake.
 
Our call came on July 5, 2002, ironically the day after we celebrated Independence. The Children’s Hospital neurologist told us she knew about the diagnosis a couple days prior, but withheld the news because she did not want to ruin our holiday. Gee, thanks. With one call, our lives changed, our dreams evaporated, and our hopes vanished. The rest of that day was a blur, a confusing mess of realization and disbelief. I honestly cannot remember what we did other than sit and try to wrap our heads around what just happened. I can still feel the gut punch.
 
That day, dreams disappeared in a flash. Gone. Over. Done. The ones where I…
 
…caught my son’s fastball and then casually tossed it back,
…nodded my confidence from the bleachers before his crucial at-bat,
…encouraged him to “go long” before throwing the football,
…tested his shoulder pads with two fists before a big game,
…bumped against him as we battled one-on-one in the driveway,
…laughed with him around a campfire during a backpacking trip,
…steered a boat while watching him learn to waterski,
…tossed him the car keys and reminded him to not drink and drive,
…smiled with pride as he helped his sister move into her new apartment,
…thanked him for cutting the grass.
 
I could go on… The dreams were many, and sometimes still are.
 
Before the call, I saw Dad-hood like most Dads I knew growing up. I saw it through the eyes of my Dad and his Dad before him. I saw activity and vitality. I saw patient demonstration and loving expectation. I imagined sports, camping, fishing, boating, swimming, running, jumping, and climbing. I imagined Alex’s college, career, wedding, and children. I imagined everything life was certain to provide.
 
That all changed after the call. As we learned more about Duchenne, I imagined Alex…
 
…falling behind his peers,
…losing his ability to walk,
…using a power wheelchair,
…losing the use of his arms,
…losing friends,
…needing help to breathe, and
…asking when he would die.
 
Fifteen years in, all of it has come true, just as I imagined, and then some.
 
But…it’s okay.
 
In fact, it’s more than okay!
 
With Duchenne, you see life from an angle you never would have otherwise. You see the preciousness of now and the beauty of togetherness. You thrive in the power of love and the healing strength of laughter. You receive sincere appreciation for always being there, be it sitting, standing, or sleeping alongside. You feel the strong connection of a loose handhold as well as the loving embrace of an armless hug. You absorb tears as well as heartbreak. You pick up your son as much as he picks up you. You give and receive absolute trust because you are his confidant, guardian, and best friend. You see bravery, in the face of Duchenne. You see your son, with eyes wide open. His and yours.
 
Rare gifts indeed.
 
When we hung up from the call, I feared life with Duchenne. I feared Alex’s inabilities, as well as my own. I feared its effect on him, as well as our family. I feared what he would be missing, and what we had lost. I worried about how we would manage the beast. I worried about the unknown and what I could not control.
 
Today, fifteen years in, we embrace it, despite what the monster may yet have in store.
 
We do so because we have one another…right now…
 
…and that’s all that matters.

A PITCH TO HIT

Perspective helps you to understand the world, your place within it, and your responsibility to others. It enables you to appreciate what you have and focus less on what you don’t. It assists you to breathe easier and deeper, while letting go of frustrations and anxieties that can bog you down. It teaches you to appreciate every moment, as you should and while you can.
 
Yet, perspective can be finicky. It can disappear as quickly as it’s found. It can hide as easily as it appears. It can leave you if you aren’t too careful. It can stay away if you take it for granted. When you have it, you know it. When you don’t have it, you don’t know it. But, often, to get it back, all you need is to open your eyes and see it...right there in front of you.
 
For this Duchenne Dad, such perspective returned to me a couple days ago at the Baseball Fantasy Camp for Kids hosted in partnership with the Cincinnati Reds. The fantasy camp is a non-profit organization that provides an opportunity for young baseball fans with special needs, like our son Alex, to enjoy a day on the field with Major League ballplayers. Currently, Baseball Fantasy Camp for Kids is established in twelve cities with Major League Baseball teams, with plans for more.
 
We have attended the Baseball Fantasy Camp for Kids for many years and every time it delivers better than ever. Previous camps have connected kids with Cincinnati Reds players Zach Cozart, Devin Mesoraco, Homer Bailey, Shin-Soo Choo, and Todd Frazier to name a few. This year, the kids interacted with Scooter Gennett, Scott Schebler, Michael Lorenzen, and Patrick Kevlehan, who collectively supported and encouraged all campers and their families. Considering that Scooter later hit a record four home runs in a game just hours after this year’s camp, suggests the camp’s positive effect, even on Major Leaguers.
 
It’s a memorable day!
 
Over the years, Alex has played catch with All-Stars, hit against Major League pitchers, and laughed with Cincinnati Reds owners, including Bob Castellini. Every year, Alex talks with staff from the Reds Community Fund, Urban Youth Academy, and Cincinnati Recreation Department. He enjoys silent, but animated, conversations and shenanigans with mascots Mr. Redlegs, Rosie Red, and Gapper. He interacts with parents and families of kids with mental and physical disabilities. He scores autographs, selfies, and fist bumps from Reds players throughout the event. To top it off, he poses for a baseball card imprinted with his picture, personal stats, and interests.
 
Fantasy Baseball Camp for Kids and the Cincinnati Reds do it right by these kids, and we cannot be more appreciative! But, what they may not realize it how far their influence reaches.
 
For me, the day brings needed perspective to our life with Duchenne. Although Kristy and I do our best to manage the beast, sometimes our perspective slips away within the daily life of caregiving, be it turning, lifting, dressing, feeding, cleaning, wiping, washing, hoisting, listening, supporting, explaining, comforting…I could go on. Sometimes we lose sight of what we are doing as we swallow our frustration with Duchenne’s unstoppable progression. Sometimes we lose perspective of what we have when we see vitality…at the park, on the ball field, on Facebook, or wherever…and consider the life we thought we’d lead before Duchenne introduced itself. Sometimes, Duchenne simply gets the best of us.
 
That’s why a day supporting kids with a range of disabilities, some severe but all very real, reminds us where we’ve been, where we are, and where we are going. More importantly, it reminds us of life, and how to live.
 
For this reason, I cherish the Baseball Fantasy Camp for Kids. I smile when Alex’s best friend, Zach, serves as Alex’s Buddy and plays catch, fields grounders, and helps Alex wherever and whenever he can. I fill with pride as our daughter, Kaitlyn, supports Alex and many other campers with high-five’s, endless smiles, and positive words of encouragement. I beam like any proud parent as Alex confidently approaches home plate, grips a plastic bat loosely across his lap, and waits for the wiffleball pitch. Like any parent, I get nervous hoping he will succeed, and hold my breath until he does. That is usually the time when Alex glances to me as if to say…Relax, Dad. I got this.
 
Then, he connects!
 
Although his plastic bat barely moves because of Alex’s declining arm strength, the joy on his face is incredible to see as the ball bounces a few feet before him and he transfers his hand from the bat to wheelchair joystick. You’d think he hit a line drive as he drops the bat while zipping to first base, eager to beat the throw. Once safely on first, he’ll lead off the bag before the next pitch, and then zoom full-throttle to second base when the next kid connects. He’ll do the same to third base, and then to home…swinging the back of his chair across home plate as if he were sliding in with the winning run. It’s beautiful to behold…and needed perspective for me to keep pushing on with Duchenne.
 
The welcome and renewed perspective doesn’t end there!
 
As one of the roving camp instructors, I chat with kids with disabilities ranging from autism to cerebral palsy to the ever-familiar Duchenne, as we prepare them to run to the next base. They, in turn, give slaps of five or ten or whatever they want, display proud grins of accomplishment and success, and express their simple joy for doing what many of us take for granted. I smile with admiration as campers’ youthful Buddies push wheelchairs and lead determined walkers around the bases by hand, while encouraging every athletic effort as true friends do. I nod with understanding as parents cheer their kids to do their best, and later express gratitude for the welcome change from daily caregiving. During breaks, we speak with parents who tell us how their kids look forward to the Fantasy Camp all year long, as its one of the highlights of their year. We listen as some tearfully share how their sons or daughters sleep wearing a Reds uniform in the days leading up to camp because they are so excited.
 
As you can guess, the Fantasy Camp is a brief escape from life with disability, but one that is SO recharging to the soul, kids and parents alike. It gives Alex a chance to get out bed and out of the house. It changes his perspective from the four walls of his bedroom to the four corners of the infield. It provides him with conversation, laughter, and smiles he so desperately seeks. It pumps him with pride of connectivity, as it brings families, friends, and larger-than-life Major Leaguers standing by his side and cheering his effort. It helps him to live a life of his dreams, as well he should.
 
Likewise, the Fantasy Camp helps me to understand the big picture of life with Duchenne. It helps me to understand that although the disease is horrible, terrible, relentless, unforgiving, menacing, teasing, threatening, discouraging, exhausting….[insert adjective here]…it’s life. It’s our life. As difficult as it is sometimes, it could be worse. As unfair as it feels, it could be less fair. As isolating as it seems, we are not alone. Baseball Fantasy Camp for Kids helps us to understand that life is a matter of perspective. It may not be the life we planned, but it’s the one we have. So, we had better live it to the fullest, like the campers do every year!
 
At the end of the day, as we loaded into the van, Alex summarized his approach to hitting, which offers valuable life perspective.
 
“Hey, Bud! You did really well today!” I told him.
 
“Thanks,” Alex replied. “It was fun.”
 
“And those hits…way to go!”
 
Alex nodded proudly, and then added like a true Major Leaguer…
 
“I just look for a pitch to hit.”
 
As we all should. Alex laughing it up with Cincinnati Reds Owner Bob Castellini in 2015

"...A HAPPY KID"

“Hey, Bud. I need to talk with you about someone we’ll meet today.”
 
So began a conversation yesterday as Alex and I drove along Interstate I-275 towards Cincinnati Children’s Hospital. The trip capped a stream of hospital visits over the past three weeks. The first included a now-quarterly pulmonary function test (PFT) and visit with Alex’s Pulmonologist. The second included a EEG brain scan to understand his infrequent dizziness and fainting. The third included our now routine Duchenne testing (MRI, EKG, blood work, and x-rays) and follow-up clinic visits with doctors from Neurology, Cardiology, Pulmonary, Endocrinology, Physical Therapy, Rehabilitation, Nutrition, and Social Work. The last visit also included for the first time ever…Palliative Care.
 
Thankfully, Alex LOVES Children’s Hospital! He loves it not so much for his testing, which can be invasive, long, and sometimes painful (note: his blood draws are notorious for hidden and collapsing veins, which are all too common with Duchenne boys). Alex loves Children’s for the people, even the ones drawing his blood (who he always thanks). He loves the visits for old friends like Herb in lab testing registration or Kenny-Benny in the Duchenne (Cardiac) clinic registration (we call him Kenny-Benny because for years we thought his name was Kenny, when it was actually Benny. Fortunately, Kenny-Benny enjoys the unique name and laughs with us every time). Alex also enjoys visits with nurses, technicians, cafeteria workers, cashiers, janitors, front desk personnel, security guards, and the like. He has come to know many on sight alone. He enjoys meeting new Children’s employees like the friendly technicians and fellows in the EEG testing lab, the Chick-fil-A cow mascot making a special visit yesterday, and anyone riding the elevator with us…to name a few.
 
Seriously, to name a few. If Alex had more time, he would visit every person on every floor, and then find time to work the parking garage. It’s amazing to watch.
 
We crossed the Ohio River and headed into Kentucky, towards I-471.
 
“Who's that?” Alex asked, his curiosity peeked by my revelation of someone new. But this time, he picked up on the emotion we were meeting someone serious. He wondered why I would make a big deal about meeting someone. Don’t they just grow on trees? He knows we have always let him meet people wherever we go. Why prepare him for someone new?
 
“Well, I’m not sure who it will be specifically. But, today we will be meeting with someone from Palliative Care.”
 
“Palliative Care? What’s that?” He asked innocently.
 
The words were understandably foreign to Alex, and to me admittedly when it came to Duchenne. Palliative Care was something in the far future…right? Palliative Care helped patients only in the late stages, correct? However, I knew we had turned a corner and crossed yet another bridge when during our recent visit with Pulmonary the doctor said she was seriously concerned, and wanted to introduce Palliative Care to the team management for Alex. That didn’t sound good.
 
“Yes. The Duchenne Clinic wants everyone over the age of 18 to begin speaking with Palliative Care,” I generalized, though honestly. For days, I had wondered how to introduce the subject. Alex turning 18 recently seemed the perfect explanation at this stage.
 
You see, we knew we must prepare him somehow. We knew having Palliative Care walk into our clinic room unannounced would be an odd and difficult pill for Alex to swallow. Best to prepare him beforehand, right? When we were driving to Children’s the morning of his appointments, the timing felt right.
 
“What do they want to talk about?”
 
I sighed, feigned distraction from cars driving around us on I-275, and then reached deep within to answer him honestly. Here goes.
 
“Palliative Care helps older Duchenne boys with quality of life issues. They want to make sure you are living as comfortably as possible and know what you want when things get tough.”
 
“Comfortable as possible? Know what I want? When things get tough? What do you mean?”
 
Oh Lord.
 
As I considered my response, spinning through my head was the prior conversation with Alex’s Pulmonologist about Alex’s declining lung strength since 2009. Over the 8-year span, his pulmonary function has declined LINEARLLY every visit to its meager function today. The trend was not good, and nothing to date helped change its direction. Unless corrected, the trend pointed to trouble ahead. This had not been the first time pulmonary voiced concern. But, it was the first time they have sought Palliative Care to assist.
 
As I drove through Kentucky and towards the Ohio River, I saw the downward-trending graph in my head. I considered whether to share the words the Palliative Care team uses in their Conversation Starter Kit hand-out. Words like wishes or preferences or worst of all…end-of-life.
 
Inhale. Exhale. Not now.
 
Traffic flowed steadily as we crossed over the Ohio River, towards Children’s Hospital, and to our last day of appointments. While driving, I felt the surrealism of Duchenne. I wanted to scream No, we can’t be THERE yet! I wanted to yell this cannot be happening NOW. I wanted to curse Duchenne, repeatedly, and then some more. Instead, I collected my strength, breathed deep, and stay focused on the road ahead.
 
“Well, at your age, some young men with Duchenne can really have a tough time. They can struggle to understand what’s happening to them. They can worry about their future.”
 
“What are you saying?” The concern raised in Alex’s voice. I clearly was not explaining as I had hoped.
 
“I’m saying that, as you know, Duchenne is a hard disease. For some kids, it can get really tough, Some may be overwhelmed with it all…”
 
Alex abruptly declares his state of mind, of which we are eternally grateful for his resiliency and positive outlook on life.
 
“Well, that’s not me!” He smiled when I glanced back with relief.
 
This is truth, and I cannot help join in his smile. His perspective of life…his Duchenne life, in particular…is absolutely beautiful (and the reason I started blogging his journey). Alex sees himself as no different from anyone else, only that he sits down more than others. Despite his physical weakness, he sees himself as an example of happiness and a spreader of cheer. He sees himself as someone who can pick others up just by talking, smiling, and helping them to smile along with him. He shares an interest with everyone he speaks, and with everyone he meets.
 
Literally.
 
If you have met Alex, you know what I mean.
 
But still, the Palliative Care team is not just a formality. They serve a purpose. An important purpose. So much so, Alex’s Pulmonologist wants them on the team, and we agree. I think, subconsciously, Alex understands this, but not fully. He feels his breathing difficulties. He hears the doctors voice their concern. He saw the doctor’s reaction when he asked her the following direct question.
 
“So, does this mean I am going to die at age twenty?”
 
Note, this has been a common question Alex has asked over the years, but it was the first time he asked a doctor directly. He held strong as he watched her sigh and pause before responding.
 
The doctors know his future. They know the challenges he faces. They have seen it before. Sometimes they are blunt. Sometimes they are not. The other day, they were less than either for clear reason. But, the Pulmonologist’s knowing glance to me told me what she truly believed. As a parent, you do everything you can to stay strong for your son. You project strength so he can, too. You project understanding, so he can with time. You project love at every turn.
 
On the pulmonary front, doctors have prescribed a new and improved ventilator for home use, and a portable ventilator (sip ventilation) to attach to his wheelchair for when we venture outside the home. This morning, Children’s Hospital Home Care spent two hours in our home demonstrating and training us on its usage.
 
On the cardio front, doctors have expressed concern with new scarring on Alex’s heart. This is the first concern ever shared from Cardiology. Although small, the scarring reminds us the heart is a muscle, too, and that Duchenne could care less of the havoc it creates throughout his body.

For these reasons, Palliative Care is welcome on our team. Things are getting real.
 
But, for now, our utmost and ultimate goal is to keep Alex’s spirits as high as possible. We must help him to keep the smile on his face. We will do everything and whatever we can to maintain this kid’s joy for life. Those who know Alex will understand what we mean.
 
We continued driving north on Burnett Avenue, and then pulled into the underground parking garage at Children’s Hospital. I dreaded the visit, and wondered if Alex felt the same way. As he rolled out of the minivan, however, all he talked about was seeing Kenny-Benny. I considered broaching Palliative Care again, but saw no reason. Alex knew how to handle adversity. He knew what he wanted. He wanted time to talk with one of his best friends at Children’s Hospital.
 
Later, I pulled Alex away from Kenny-Benny and guided him to our clinic room where we spent the better part of the day waiting and talking with the endless stream of nurses, technicians, and doctors. It was a familiar day, one we have enjoyed for nearly 15 years now. For years, Duchenne was a distant monster coming closer. For years, life moved along as best hoped. Only now, do the visits seem real…and vital.
 
“So, Alex, tell us about what you like to do,” Dr. Widener of the Palliative Care team began. “What makes you happy?”
 
Classic kid shoulder shrug, followed by awkward silence and searching eyes. Alex, then relaxes and fills the void as only he can.
 
“I don’t know. People, I guess. I really enjoy meeting and talking with people.”
 
Smiles all around. A difficult subject appears easier to discuss.
 
“That’s a wonderful trait to have,” Dr. Widener responded with sincere admiration.
 
And, so began our meeting with Palliative Care. It was introductory of sorts, thank goodness. I’m not sure we’re ready for the hard topics just yet, the ones to come. But, I could feel Dr. Widener delicately searching for clues on how Alex approaches life. I could sense his gentle handling of very personal worries and concerns. I nodded in thanks for his professionalism and Alex’s incredible attitude. This was Alex’s time to speak, and my time to listen.
 
“I’m a happy kid.” Alex expressed.
 
“Yes, we clearly see that. We want you to keep smiling, keep talking, and keep doing what you do.”
 
Kristy and I couldn’t agree more.

THE LIGHTSABER

Sometimes, the simplest of dreams light the way. They carry us when times are tough. They stay with us when all seems lost. They live and thrive in our minds, colorful and true. They’re ours and ours alone to nurture and grow. They keep us moving forward, sometimes for years on end. They captivate, encourage, and support us when we need it most. And, when the opportunity to realize a dream arrives…you seize it, while you can.
 
The opportunity for Alex to realize one of his dreams came last week when the 2017 Star Wars Celebration returned to Orlando, Florida after a five-year hiatus. The date had been marked on Alex’s calendar from the moment it was announced over a year ago. He counted down the days until our road trip began. He ordered his costume. We bought him a blue lightsaber.
 
You see, Alex not only loves Star Wars. He LIVES Star Wars! He knows every character from every scene from every episode. He practically knows every line from any scene. He plays every Star Wars video game. He has watched every season and every episode of Star Wars – Clone Wars and Star Wars - Rebels. He reads Star Wars encyclopedias, books, and comics. He collects Star Wars Lego characters. He watches YouTube videos of the Jedi Council and other Star Wars enthusiasts…repeatedly and then some more. He keeps a Darth Vader journal.
 
It’s truly magical to see his love for Star Wars, and something to behold when you consider his life with Duchenne Muscular Dystrophy. A disease that steals so much from him cannot take away his love for Star Wars. So, we made it a priority that Alex would be in Orlando this year because nothing, not even Duchenne, would stop him from attending. Even the return of his pesky chest congestion and mucus-filled cough was no match for his determination to drive nearly 2,000 miles for four days of Star Wars and nothing but Star Wars.
 
The morning of its arrival was something special. Alex awoke with a smile on his face and urgency in his voice. We dressed him in layers of fabric, sashes, and belts per his Star Wars specifications so he could arrive as Obi Won Kenobi. He carried the blue plastic lightsaber across his chest as his powerchair bounced along the sidewalk. His wheelchair slowly parted the sea of Star Wars fanatics moving towards the entrance (note: more than 70,000 fans attended the four-day event).
 
Inside, the 2017 Celebration year did not disappoint. The crowd was amazing and an abundance of lightsabers waved at every opportunity. Kathleen Kennedy, the president of Lucas Films, kicked off the four days by introducing George Lucas, the creator of Star Wars, who explained his passion for bringing Star Wars to life. Warwick Davis (Wicket, the Ewok) hosted the event as Mark Hamill (Luke Skywalker), Harrison Ford (Han Solo), Anthony Daniels (C3PO), Peter Mayhew (Chewbacca), Ian McDiarmid (Emperor Palpatine) Hayden Christensen (Anakin Skywalker), Daisy Ridley (Rey), and John Boyega (Finn) appeared live to talk Star Wars. Samuel Jackson (Mace Windu) and Liam Neeson (Qui-Gon Jinn) joined via satellite. Carrie Fisher’s daughter gave a moving tribute to her late mother. The great composer and conductor, John Williams, led his incredible orchestra through several Star Wars pieces including the familiar introductory theme.
 
DUN DUN DUN DUNNNNNNNNNNNN DUN

DUN DUN DUN DUNNNNNNN DUN
 
(admit it, you just hummed along)
 
During the Celebration, we watched in awe as Rian Johnson (Director of the upcoming Star Wars movie, The Last Jedi) introduced a clip, and Dave Filoni (Director of Star Wars - Clone Wars and Star Wars Rebels) premiered an entire episode of Rebels Season Four. Over the four days, we enjoyed panels from Mark Hamill, Anthony Daniels, Ray Park (Darth Maul), Ian McDiarmid, Warwick Davis, and Billy D. Williams (Lando Callrissian). We admired the attention to detail from fully-adorned fans parading across stage in the Star Wars Cosplay Competition.
 
The force was with us.
 
Yet, the Celebration exhausted Alex, as the daily grind of Duchenne took its toll. Each day, he endured nearly 15 hours sitting in his power wheelchair, fighting through oblivious crowds, and being repositioned often for comfort. Even in our accessible hotel room, Duchenne reared its annoying head as our Hoyer Lift could not be positioned with its legs under the bed. This forced us to place the lift at a corner, lower him with his feet on a chair, and then pull him up to the pillows. We performed these acrobatics every morning and night. When we brought the issue up to the hotel management, they looked at us like we were from a galaxy far far away.
 
Sigh. Another day with Duchenne. Just deal with it as it comes.
 
Moreover, Duchenne’s reach extended farther and in a manner not entirely fair. This year, the Celebration set up a wristband policy to attend the highly-sought panel discussions with limited seating. As you can expect, thousands of fans camped overnight in line waiting for a wristband. They brought pillows, sleeping bags, and ordered pizzas. They got little sleep, and Star Wars celebrities did their best to entertain the fans and keep them going through the night.

Because of Duchenne, Alex could not camp overnight and, similarly, I could not leave him alone sleeping in the hotel. So, every day, all wristbands already had been distributed by the time we arrived in the morning. We were forced to wait, patiently, on standby every day to see a panel. It’s a difficult concept to explain while thousands of excited fans stream inside.
 
“It’s not fair, Dad! Don’t they know I’m a fan, too!”
 
When we raised the issue with the Celebration staff, they simply shrugged and said Sorry, that’s policy. Over time, however, the staff came to know us and understand our situation. They would then quietly usher us inside to the back of the assembly. Not the greatest of seats, but we took them. Fortunately, we never missed a panel we wanted to see.
 
While waiting, I could not help but consider the differences of Duchenne since our last Celebration in 2012. The changes were significant. As a then 13-year old with Duchenne, Alex traveled in our minivan’s front seat, head high and proud. His wheelchair waited in the back, secured and empty until needed whenever we stopped for food, hotels, or simply to stretch. He flipped through Star Wars magazines and his character encyclopedia while I drove. I handed him a snack or drink whenever he wanted as we drove on down the highway listening to his teenage tunes. In hotels, I piggybacked him onto the bed, couch, and toilet. Alex could sit up to get dressed. At restaurants, he could hold a drink and feed himself.
 
Not so much anymore.
 
Today, as an 18-year old with Duchenne, Alex remained in his wheelchair throughout the entire 2,000-mile round trip, which his sore back just loved. He slumped frequently from the bounce of the road and we stopped often just to lift him back.

Because of Duchenne…
 
…He could not hold a book or read while riding in the minivan.
…He could not scratch his head or blow his nose (that darn cold), causing me to reach back while driving to help him perform these simple tasks.
…He could not hold a drink, causing me to reach back while driving to assist (with a straw).
…His cell phone frequently fell from his hands because he could not keep a grip (note: we drove many miles listening to his music as it continued to play from the minivan floor).
…His head pillow frequently fell while he slept due to the bounce of the road.
…He required help with every bite at every meal, every day and night.
…We needed a Hoyer Lift to transfer him into bed.
…He laid flat on the bed to get dressed.
…He could not use the hotel restroom.
…He used his cough assist to help clear his mucus-filled lungs after long days.
…He used his Bi-PAP every night so he could breathe and get a good night’s sleep.
 
I thought about future Celebrations in Orlando…
 
But, thankfully, Duchenne did not stop Alex from enjoying himself this year!
 
Per his usual, Alex talked with everyone he could find. We met fans from across the United States and all over the world (Singapore, Thailand, Peru, Germany, England, Brazil, Japan, Canada, and Mexico). Alex chatted with security personnel, police patrols, canine patrols, crowd control managers, maintenance staff, concessions workers, registration workers, ticket takers, wristband checkers, production operators, stage hands, and cameramen. Alex sought out costumed fans for pictures and, likewise, they took pictures of him in costume. He befriended the Celebration warm-up host, Mark Daniels, (who later ushered us into prime panel seating at a later panel). Alex was the fortunate subject of a selfie taken by Warwick Davis. In a crowd, Alex recognized and confidently approached Pablo Hidalgo, the Creative Executive for Lucas Films.
 
Who recognizes Creative Executives??
 
THAT should tell you the level of Alex’s fandom!
 
Yet, for me, the most touching part of the Celebration was Alex’s lightsaber. We had bought it at Target a couple weeks before we left. It’s simple, plastic, and blue, the kind that telescopes out when you use it. When you push a button, it pulsates a lovely groaning sound and lights up. Although awkward for him to hold, he carried and rested it across his chest every day. Though unlike many of the elaborate lightsabers we saw at the convention, Alex’s blue lightsaber meant the world to him and now me.
 
When I asked him why he carried it every day, his answer struck me deep and had me appreciating his determination to not let Duchenne hold him down nor keep him from realizing his dream. We should all take note.
 
“Because I can’t clap,” he answered with conviction. “I move the light saber so everyone knows I am having fun.”
 
Here was a kid who could not move his arms and barely wiggle his wrists, yet used the lightsaber to express himself. Here was a kid dressed as Obi Won Kenobi, determined to enjoy the day….and let others know it.
 
On the first day, during the Star Wars 40th Anniversary panel where the endless stream of stars came marching on stage and where John Williams conducted his orchestra, my heart filled with pride that Alex could experience his dream. I looked over to him and saw his eyes closed and head tilted back. I worried the long drive, crowds, and wheelchair-sitting wore on him. I worried that his chest congestion and breathing difficulties were taking a toll. I worried that fatigue and physical exhaustion had set. I feared the return of his dizziness.
 
“Hey, are you doing okay?” I asked with concern.
 
Alex opened his eyes and turned his head towards me. He wiggled his light saber and smiled with relaxed content.
 
“I’m just really happy.”
​ May the force be with you!

CHEESE CONEYS AND A FRIEND

I am SO tired of this disease.
 
I just want it to go away.
 
These aren’t my words, though they could be. These words are Alex’s. They’re raw, honest, and from the heart. They also spilled into my side late last Saturday night while I cradled Alex's head outside the Eastgate Skyline restaurant. His good friend, Zach, stood by his side in support.
 
The night before, the young men kicked off a weekend of video games, movies, hoots, and hollers. While Kristy and I enjoyed our traditional Friday Night Pizza and Beer, the boys' gaming voices echoed throughout the house. It's a beautiful sound when you think about it - two young men enjoying a lasting friendship in the midst of Duchenne. The support that ensues is immeasurable and beautiful.

By 10pm, the adults faded away and the boys continued onward. I sleepily responded to several calls throughout the night for more pizza, snacks, and waters. Around 6am the next morning, the boys called it a night while Kristy poured the first cup of coffee. Not surprisingly, Alex and Zach slept most of Saturday.

On their waking early in the evening, they ate lunch and prepared themselves for another late-night adventure. Our first stop would be Kong: Skull Island, at the Milford Cinemark Theaters. We hoisted Alex out of bed and into his wheelchair, secured him in the van, and drove into the cold night. Jokes, music, teasing, odors - all Dude Trip necessities we have perfected over the years – filled the van. The theater was packed, the movie was good, and afterwards, our bellies growled for food.
 
We settled on Skyline, one of our favorite staples. After parking remotely (because the ONE van accessible handicapped space was taken…don’t get me started), we made our way across the parking lot and into the restaurant. For those who haven’t been to the Eastgate Skyline, the glass door entrance is a bit of a zig-zag for wheelchairs because the outside door is on the left and the inside door is then on the right. In the space between, Skyline unnecessarily adds a gumball machine, a wire rack of magazines advertising apartments for rent, and a wooden rack advertising jobs and cars for sale. All glaring obstacles to novice drivers, but Alex expertly navigates the course every time. I don’t know how he does it! Though I would soon gain an appreciation.
 
Inside, we found our favorite spot. Our server placed crackers, napkins, and forks on the table and memorized our menu-less orders (anyone who knows Skyline, knows that menus are taboo). Cheese coneys with mustard and onion for each of us, three-ways for both Zach and I, and spaghetti with cheese only for Alex (the chili makes things a bit messy for him). After a sprinkling of hot sauce, we talked about school, NCAA hoops, and girls. The boys nodded their cool-headed hellos to other high schoolers sitting nearby.
 
Life was good.
 
Because Alex can no longer lift his arms, I help him eat. At Skyline, I spun spaghetti on his fork, placed the fork in his hand, and then raised his arm to his mouth so he can feed himself. All went as planned, until midway through the meal when Alex asked to be sat back in his wheelchair because he was uncomfortable. This is not uncommon and typical for him as his spinal compression fractures often bring discomfort while sitting for long periods of time (remember we had been at the movies).
 
“Ugh! My stupid back!” he announced, signaling a familiar tune.
 
“No problem,” I told him (note: we’ve done this thousands of times before…literally). “Just roll away from the table and I’ll lift you back.”
 
He did. I did. And after multiple re-positions for comfort, Alex returned alongside the table to continue eating. Before long, his back bothered him again, so we repeated the effort. Later, when we finished our meal and leaned back in fullness, Alex asked to be sat back a third time. Again, not uncommon. But, afterwards, Alex still fidgeted and leaned his chair back and forth to find relief. It was clearly apparent Alex was uncomfortable and needed to get home. We left our table.
 
That’s when our night changed...dramatically, and the relentless, unforgiving nature of Duchenne crashed our party yet again.
 
While backing away from the table, Alex said he was feeling a little dizzy. I told Alex to follow Zach outside for some fresh air while I paid our bill at the checkout counter. I reached for my wallet and nodded pleasantries to the cashier. I considered Peppermint Patties for the boys.
 
That’s when I heard the crash. Heck, the whole restaurant heard the crash!
 
I looked to my left and saw the back of Alex’s chair banging into the glass door as he struggled to drive through the zigzag entryway. At first, I thought Alex just had trouble maneuvering through the obstacle course. But, that was unlike him. Usually, he can turn his chair on a dime. I then noticed Zach desperately trying to hold open the interior door with his fingertips, at the same time dancing on his toes to avoid being run over. That’s when I noticed Alex’s head bobbing uncontrollably as his chair reversed and slammed again with abandon.
 
Something wasn’t right.
 
I immediately ran to Alex’s aid, thinking he was stuck, only to find his eyes rolling back in his head and his arm falling away from his wheelchair joystick.
 
He slumped…UNCONSCIOUS!
 
I’m telling you, that scared the hell out of me! Alex has been dizzy before, but it was ALWAYS controllable. He NEVER passed out! We had discussed the issue before with his doctors and they told us he could be experiencing hypoglycemia or rapid drops in blood pressure, which would cause the dizziness. They said the episodes may be related to pre-diabetes, heart issues, neurological issues, or simply dehydration. They tell us he is at risk for these health concerns because of his Duchenne and related obesity and immobility. They tell us to watch for when the episodes happen, take note, and do our best to calm Alex when they do. His dizziness is typically brief and quickly relieved through hydration, fresh air, and steady breathing. All well and good when Alex is responsive. But when he’s not…
 
I quickly told Zach to hold the outside door as I grabbed the joystick and maneuvered Alex through the glass maze. I was determined to get Alex outside immediately (I am sure the Skyline manager thought we were ditching the bill). Though somewhat skilled in steering Alex’s wheelchair, I slammed it into the wire and wooden advertisement racks, sending the racks sprawling to the ground and the magazines flying everywhere. Thankfully, I avoided the gumball machine. During the frenzy, I also managed to slam Alex’s hanging arm into the exit door jam. I was desperate.
 
We made it outside where I cradled Alex’s head, held his hand, and urged him to breathe. Zach stood by in silence as he was clearly shaken. He saw Alex’s purple lips and pale skin. He saw Alex slumped and still. He was concerned, as was I. During that moment, I clearly remember thinking worst case thoughts and not now, not now! Not that there EVER is a good time, but Alex has a life to live! All kids do! I know some of you may think it was only fainting. But, when your son is limp and unconscious in your arms, it’s a frightening experience…and a cruel reminder of this horrible disease.
 
About ten seconds later, Alex thankfully regained consciousness. As a parent, the feeling of relief was incredible and I hugged him close! As a friend, I am certain Zach felt the same way, as I remember him saying “Dude, you scared the crap out of me.” But, as a kid with Duchenne – the one shouldering the hardship - I could see that feelings of concern, worry, and fear gripped Alex hard.
 
“Dad, what happened? How did I get out here?” His first words shared as we waited for him to recover.
 
“You passed out, Bud. We got you outside as quickly as possible.” I nodded towards the magazines scattered about the floor.
 
“Whaaaat?" he said woozily. "I don’t even remember coming out here. The last thing I remember was not being able to see. Everything was dark. I couldn’t find the door!”
 
Zach stood by shivering in the cold. “Dude, you about ran me over!”
 
“Really?” He said with concern. “Sorry.”
 
“No need to apologize,” We told him. “Just keep breathing deep. Everything will be alright.”
 
I looked up and saw a Skyline worker cleaning our mess. I apologized. He said don’t worry about it, then asked if we were okay. I told him we were fine, and that Alex just needed some fresh air. I assured the kind man I would be in soon to pay our bill. I then told Alex I need to go inside, and started to pull away from cradling his head. Alex clutched tightly.
 
“No, hold me, Dad! Don’t leave me.” I obliged without hesitation as any parent would.
 
“Hey, we’re never going to leave you, Bud!” Alex pushed his head deeper into my arms.
 
“Why did that happen?” he asked quietly while staring at the ground.
 
“I don’t know. Perhaps I didn’t give you enough water. Perhaps it was the pasta. Perhaps…”
 
“Am I dying? Will I make it home? I am not ready to die.”
 
Zach and I did our best to calm him. But, inside my head, I cursed Duchenne. Seriously. Cursed. It. I’ve said it before, and I’ll say it again. No kid should EVER think about dying. No kid should ever worry about death. I realize Duchenne has unique challenges and the odds are completely stacked against us. But, dammit, make it stop already!
 
“No, Bud. You are not dying. You have a whole life in front of you. You just fainted, but you’re doing much better now. You’ll be fine.”
 
“Yeah, you’ll be fine, Alex,” Zach added with growing confidence that everything was okay.
 
Alex calmed down and breathed deep. His skin color returned to normal. He began to feel like himself again. He also connected the dots. He knew his fainting was likely related to Duchenne. He calmly and deliberately shared his heart. You could practically feel his emotional pain.
 
“Dad, I am SO tired of this disease. I just want it to go away. I just want it to be over.”
 
“I know, Bud. I know. Me, too.”
 
What more can you say?
 
Alex’s doctors always put on a happy face and spin to the positive. They always do their best to keep spirits up. They must, understandably. But, if you look close, you can see what they see. It’s not pretty. Those in the advanced years of Duchenne will offer support. But they, too, know the road ahead only gets rockier. They experience it every day. Although therapies and wisdoms prepare you for hardships to come, NOTHING prepares you for the hardships that do. Having been through a few of them, all I can say is those moments are best handled through your heart and with a deep sigh. With Duchenne, you take each day as it comes, however blunt, and do your best to keep moving forward. You learn to support one another and carry on with love in your heart because, in the end, that’s all that matters.

You can also find the good in all this. Because, even during Duchenne’s darker moments, life’s beauty rises visible and strengthening, if only for a short while. It’s these moments that keep me going along our journey. And last Saturday night, after this frightening episode, I witnessed perhaps one of the most tender scenes in Duchenne I have ever known. It went like this.
 
When I finally convinced Alex we really did need to pay our bill, he reluctantly lifted away from my side and let go of my hand. Alex then opened his hand towards his best friend.
 
“I know it’s probably weird, but will you hold my hand?” he asked. There, in the cold night on the Skyline front sidewalk, Zach reached down and gripped Alex’s hand without hesitation.

"You bet," Zach replied.
 
“Thanks,” Alex said from his heart. Zach simply nodded as good friends do.
 
I marveled at the scene, choked back some tears, and then walked inside smiling.
 
As I paid our bill at the cashier, I looked through the window to check on the young men. Zach stood by his friend as Alex leaned close. I appreciated the support. But, when Zach placed his other hand around Alex’s shoulder, well...it filled my heart.
 
This journey with Duchenne is and will be difficult. The road is and will be rocky. But, with support from friends like Zach, it’s bearable...
 
…and beautiful. when you need it most.